Sophia3

I get the migraine auras withOUT the headaches and at times they can be disconcerting. VERY random, rare & intermittent over the years. Sometimes it's like my glasses are dirty and I can't see straight in front of me or if I am looking at somebody I don't see their entire face. sometimes it's so bad my rectangle windows will look triangular. VERY bizarre if you haven't had these visual auras to explain. I have no idea how old you are so don't know what you mean by discriminated by age! Good luck with your eyes.

beta blockers and other meds mess UP the ability for orgasm, too...so it's tricky. I admit I've had times or arousal where my HR was so high, and chest pounding, I had to take a break and just lie still for a couple of minutes..it happens....but sex is still worth it. Simmy True about meeting a wife's needs but I was speaking of the times when women with this ANS junk sometimes are just too tired or go thru a period where they'd just as soon not have sex. and for many, apparently that happens!...then you have to remember the other person's needs...but yes, life/communication/sex should ALWAYS be a two way street, 50/50 situation. BUT, sometimes the other person may need to take or give 75% during times of extreme fatigue. As long as the other person knows it's not neglect but physical symptoms interferring, the relationship will not suffer, hopefully. COMMUNICATE! Read & talk/COMMUNICATE some more!

WOW that stinks about the dry issue and you can't use ANY of the lubricants?! No answer for that. Just have to get 'creative' for hubby and do other things. Gotta think of his needs even if ours are limited. Heck the late Christopher Reeve still enjoyed sex as a quadriplegic. He said he and his wife got very creative....so read up on sex for disabled people. You can get great tips. Good luck.

Take a break if you can if things are not in critical moments for either of you ! Tyr positions where you don't have to move your head around...supine or on side. Get creative. There are many ways to have sex w/o wearing us out, though orgasm is exhausting but worth it..though with ANS issues can cause anorgasmia (INABILITY to have orgasm at the time we want too!!) so you can learn to work around that. There are many things I've learned over the years but not sure I could go into detail here that are very helpful. Look into Tantric sex or Tao sex for the alleged extended orgasms which are really just very extended forms of heightened pleasure (In some ways BETTER than the quick 'genital sneeze' as I say though you don't get that release from the big O=however it still keeps me smiling the rest of the day, and well, you can finish things off later if you catch my drift) I am talking heightened pleasure almost to the point of no return, or when you KNOW an orgasm is going to happen. I discovered this accidentally about 15 years ago. I'm not with a full-time special significant other at the moment but do 'see' an old friend I've known for many years when he's in town and it's a bummer when my earth, moon, and stars and dysautonomia do NOT COOPERATE. But like I said, get creative, be open-minded to new things (I'm not talking toys though that works for some people) If you can totally be yourself with a partner, there are many ways to work around the triggers. And the physical intimacy is worth it..and also critical imho if you are married/or in full time relationship with a person. I've often wondered about doing an internet show on sex for disabled but know that folks would be too shy to call in thus, never did. :-D But I certainly do have some great tips!!! No brag, just fact. You can google many things on the internet to help out in this situation. But avoid the stuff that makes you feel you have to do gymnastics or get in pretzel positions to 'make things happen'. Good luck p.s. this link gives some good general tips for disabled though it's aimed at those with spinal injuries. But it might be helpful for some to open conversations with loved ones. http://www.thesite.org/sexandrelationships...enyouredisabled

A few years ago, there was article in the news about chocolate milk having more replenishing electroytes than Gatorade + it has protein. I'm not surprisedd you are feeling better. Many "Naturapaths" have an agenda of some sort (no offense) My sister takes people to see some "gifted healer" and about 100% are dx w "Candida syndrome" (most over dx thing besides stress/adrenal burnout, but I digress!) ...so I say do what your body seems to like or whatever helps you. For some of us it's chocolate, hot dogs, milk, whatever.

I did not know neurontin aka gabapentin came in such a low dose! I have the 100mg and thought IT was the lowest dose. It should calm things down as it works on the GABA receptors of the brain & was originally an anti-seizure medication. Those tend to agree with me somehow..go figure. Anyway I started it for pain but I am taking 1/16th the NORMAL dose.Am on 100mg. I can sometimes take 200 or 300mg..but 300 mg I can't think/reflexes are slow so can't leave the house. On the other hand, 100mg or even 2 or 300, MAKE ME MOTIVATED to DO THINGS! it's very weird. Dizzieness is an issue for me and prominent side effect of this med. I do not care. It gives me energy to clean the house or COOK. And gives me a bit of an appetite by removing that HUGE KNOT in my stomach that makes me feel full all the time. YAY. So it makes me slow mentally but makes me want to be productive. Go figure. Also helps my mood but that is just a by-product in my case. I would try it. I hope to build up to 300mg pill..am on a capsule now. If you are miserable, open your mind up to try something new. just do it DURING DOCTOR's hours! That's my philosophy so you can call if the med makes you feel weird. Good luck.

Wow. levels of THREE??? I was told my level of 27 was enough to add to my joint pain isssues by a rheumatologist. But I find I have digestion issues of stomach ache, gas when i try to take these needed "supplements". Sure sitting in the sun is fine if it's not MUGGIE out but what about winter in Ohio when you don't see the sun for SIX MONTHS..and can't even cast a shadow on the ground which means NO Vita D is getting thru. It's maddening. I am the same way with calcium supplements. Carbonate version is &^%$* and basically chalk. and the Citrate causes issues like Vita D. Odd that we can be LOW on things we need but pill form does NOT work. *sigh*

Ok...I've got lots going on, in a PLETHORA of areas, but the lastest weird thing was then I saw a new doc, Rheumatologist last month. She did a BOATLOAD of tests to rule out quirky plethora of INCONCLUSIVE blood test my autonomic doc ran. My blood work to test kidney function was good but I showed protein in a dipstick urinalysis & ketones that looked like "starvation" levels. Sigh. I RARELY eat before 5 pm except coffee & handful of nuts or a few crackers. NO APPETITE. So I figured the urine showed protein due to orthostatic stress, which as we know can affect many blood tests (for me glucose, cortisol to name a few) And extra ketones would be another since the adrenalin pumps up my metabolism/ Also the urine was taken at END of 2 hr wait/visit at Rheumy's & after she kicked up EXTRA INTENSE pain with "FM point ck"...Guess she didn't take my word at having it and I understand that since it just came up in converation & I was there for ANOTHER matter. So she did the ONLY "Scientific validation test" for FM. Man, she was no gentle but said she saw MANY FM pts & liked to hit the rt spots to get true answers! Ha. So pain creates havoc with adrenalin levels, too. But since we know my norepi levels more than TRIPLE while standing, I figured it could show weirdness in urine tests. Rheumy's office wanted urine test repeated in a few weeks so I had my autonomic doc do it on Wed. STILL protein (1+ but still significant) and high ketones. you should show no protein or more than a trace though dehydration & "strenuous" excericse" can cause a little protein. Well, with those of us with racing HR, I was hoping it was just that. Then my autonomic doc sent out my sample for some detailed test (forget what it was called)where they take ratio of something to creatinine..and base it on age, sex, weight. He also found "postural proteinuria" listed on his computer, so we figured it was probably that. HOWEVER you can show normal blood work for kidney tests & have protein in urine be the sign of many things, benign or serious & early kidney disease... I will spare you details of...Thankfully they called today and the protein was NORMAL for the ratio of everything else. The next thing would've been a 24 hour collection or 4 hour one of me supine most of the time. It's been years but we used to do LOTS of urine collections on me in the early years of this stuff to rule out endocrine/kidney problems since my ANS doc is endocrinologist. So if you ever show protein that doesn't make sense for us it can make sense, especially when blood work is normal.

Thanks for the link on Choc milk vs Gatorade! I'd heard that a couple summers ago and plain milk is just ugh...unless I have cookies/brownies with it. I don't care about HFCS. I am not fat, cholesterol and all is very low. AND I FEEL BETTER after drinking it! :-) I rarely drink soft drinks except for nausea, usually ginger ale..sometimes Coke. They claim we dont really absorb the calcium from milk well unless it's raw milk which can't be sold. There is a place in SE Ohio, http://www.snowvillecreamery.com/ They use less heat on milk & don't pasteurize it. It's fablously tasting. I got some a few weeks ago. $2.00 half gallon which is great price. Their cows are treated nicely and all that good stuff. Unfortunately, my house mate did not drink this milk and by the 4 or 5th day, it did not taste as fresh to me. Otherwise, woulda gone back for more. They only deliver to places the milk can be driven within a few hours. Wish ALL milk was made like this. We would absorb more nutrients. I LOVE Cheese as well and use it in moderation.

I do whatever makes ME feel better and 'standard diet' or trendy nutrition du jour might be worth a shot but if feel worse, go back to normal diet. Chocolate milk is said to be better at replacing electrolytes than gatorade. I LOVE CHOC milk as does my house mate. It's a great snack & fills us up. I use Hershey's syrup in milk. If one is having digestive issues might be worth stopping milk to see if it's a lactose intolerance thing. Otherwise many of these "naturapathic" docs are just over priced nutrition guidance counselors. I've used to read and study on nutrition since 1980 & have been there done that with vegetarian/vegan/ mostly raw food diets/ Gluten Free diets, etc. But again, we are all individual like fingerprints. What helps one will make another feel worse. So go with what makes YOU feel better and don't let any doctor DICTATE is my theory. We usually know our bodies better than anybody but enlighten yourself with books on nutrition & you make decisions. You can look online as well but be careful of sites that sell stuff.

Thanks for the responses. I just find washing, cleaning veggies so exhausting. Our table is at opposite end of kitchen & no where near my counters/working areas. So rolling chair would make me dizzy to go so far! ha. I do the casserole thing or slow cooker..but just need to think how that works with veggies I am unfamiliar with..also wanting to avoid yeast ..which I never bake with & try to avoid breads...except with pizza I eat too much. Night shade diets being less inflammatory is debateable. Some use it as an agenda to sell books of course. But some DO benefit. So it's just food so why not try. Just HUGE change for me so doing it in baby steps then once committed will try & stay on for three months. Here is a link explaining it a bit along with other foods to avoid..which I already knew it's just STANDING time & all..wears me out. http://nutrition.about.com/od/dietsformedi...iinflamfood.htm

Ok I know how to cook in steps easy foods to make, mix up flour parts of cookies/cakes and do the rest later. But how do those living alone or cooking alone do it? I have a bar stool but it does not help due to feet too low. I'm too sore & arthritic to sit on floor. I am talking cooking with whole grains, rice/millet. making EVERYTHING from scratch, and cooking healthy without STANDING so much. I am trying to go off potatoes/tomatoes & night shade vegetables. A vegan friend said in email his wife makes fake tomato sauce. Anybody seen this? "You can make a fake tomato sauce out of cooked carrots with some beet, oregano, and other seasonings. It tastes pretty much like tomato sauce. It just takes a bit of time. I freeze some." The fact it takes time, all whole food cooking takes time..making collard greens, mustard greens?! Heck I've never made those or parsnips. I still eat meat/fish but want to know how the heck folks cook healthy all the time when some days, you can't be UPRIGHT for long. I can't remember if this has come up before but trying to stand/sit to cook healthy is not easy. I know diet will not fix OI but I'd like to try going Nightshade free for three months and macrobiotic is suggested as well as salmon, mackerel. (Bought Mackerel today but never used it!)

I tried some years back for appetite (i rarely have one) I'd like access to some now for eye issues but apparently nobody i know, knows anybody who uses that stuff anymore...not even musicians. ***? Sorry it didn't help you.

I'm so sorry for the loss of your mother! You and your loved ones have my condolences.

ok...this STINKS if they were TOTALLY clueless. It's all about HR, docs , in POTS = Postural Orthostatic TACHYCARDIA Syndrome. Dummies!

Is this show online anywhere? Will have to check that out. Did they handle the topic seriously?

Well basic, TECHNICALLY speaking. POTS is all about HR INCREASE. your BP can stay the same, but if HR increases 30 BPM or more USUALLY means pots. My HR leaped 55 BPM on first minute of ttt. They never gave meds to spike HR where I went ...first, I did not need it and w my HR ...would not have been smart move. My BP is often low while resting...can jump when standing then drop back to normal. But we do not want to confused facts. Postural Tachycardia Orthostatic INTOLERANCE is judge by fast HR alone..which is why MANY docs that give TTT FAIL TO RECOGNIZE POTS..they are used to BP jumping or falling.....sigh. The place I went also thought administering isoprop (sp) gave false answers.

Well I am no doctor and have NO clue your dosage or WHY you are on meds..but I would be calling my doc and weaning myself OFF the bbs NOW to clear them out a couple of days before the TTT. Why? because it WILL EFFECT the TTT readings! You said it's a "diagnostic test", correct? TTT are usually only used WITH MEDS in research or to see if things have improved on said medications. You as a patient have the power to make the choice to go off the med before the test as long as your doctor agrees and it's not LIFE THREATENING for you to do so. Otherwise your TTT is a big waste of money in my book. Heck if Coffee can affect the test, a bb that blocks the anxiety adrenalin will as well. (Performers OFTEN take bb before going onstage to CURB the excess cats/that cause adrenalin spikes) Again, I'm not telling YOU what to do but what I would do. The above post is meant for information purposes only. It is not meant to diagnose, treat or cure a medical problem. Good luck. p.s. Sometimes we have to be OUR OWN pt advocate and that can mean going against what doctors tell us. But I've had 18 years of practice at that so . . .

If you're getting a TTT you really need to be OFF meds to get an accurate reading. As Angelika said, CALL to clarify what you were told. Communication issues in offices is rampant and I never believe what I am told unless verified by doctor. i.e. I was told I could not TAPE my visit with one doctor visit and got his email and asked him. He said sure, I could bring in tape recorder so I have the visit on cassette. Ya never know.

Reen Interesting study! Wish I lived closer...can't travel really. But we always figured the dry mouth was due to ANS issues.....but then we get complacent if things worsen...and now the SUDDEN dry eye after the iridotomy issues.... Others Apparently my endo & ANS doc of many years thought he ordered dsDNA test but did not...so since just my ssDNA was positive and other stuff were normal (like SED & ANA) I see a rheumatologist May 11th, I think. So will decide more tests then. I've been enjoying the nicer weather for sure!

Can't do fish oils due to gross burp up factor!! Or the alpha linoleinic (SP??) oil either. HOWEVER, i've bought some flax seed, and grind it in the coffee grounder to add to muffins & smoothies. Going to try to work up to servings of three Tablespoons a day. It can have a mild laxative effect so going slow. So far, so good. If you eat the seeds whole they pass right through you undigested. The Omegas they carry are allegedly beneficial for dry mouth/eye issues in Sjogren's (which we think I have, see a rhemy in 3 weeks) Also just plain good for you in many ways. I also plan to try and eat Wild Alaskan canned salmon a couple times a week. I don't eat fish much at all due to mercury issues. And just take a multiple vitamin as well...and some ginger capsules when I remember (Natural anti-inflammatory) Not sure the affect on POTS. Good luck.

*Duplicate post, sorry*

No have not done the plugs...eyes fluctuate. Its the mouth that is maddening lately. I never heard of OTC gel but have the goopy eye ointment and need to get another tube. My eye doc gives me that also. He's been a doll to me since the surgeons are so far away..and he's more understanding. This goop did not always seem to help but other times it did. It's like vasoline in texture. I also need to invest in Biotene toothpaste. I found a sample of the Biotene oragel from my dentist but not sure it's better than the mouthwash.. THAT stuff is so expensive as well. My optometrist gets only RARE samples and small amounts of the preservative free drops but they do help. I can get many drops out of one tube. I put the cap back on and use later. Eye can only hold one drop. So a $15 box can last me month...but yes, all this stuff all adds up. I'm just irked at my blood test "never coming back". Sigh. I just re-read my autonomic docs email and it said this. 'some appear to still be missing. (the specific Sjogren's antibodies, and Double stranded DNA)) perhaps they never will but the SS-DNA (single stranded DNA is markedly abnormal: 212 units with normal 0-19' so the SS-DNA means Sjs but there are so many TESTS needed for all this stuff (Lupus dx) No wonder it can take 7-10 years to be dx. Sheesh. Thanks for the input on all this stuff. I have done MORE READING since the Wed AM email from my doc about the positive tests than I have in weeks or months. So since the eye surgery "triggered the dry eye stuff" I must use my eyes less and rest them ..or it aggravates the eye discomfort for sure. Off to drink coffee and get some drops.

Thanks Bella. Anybody with experience with this stuff is helpful! So sorry about your eye deal. I use the expensive preservative free drops several times a day as I am leary about the Restasis ad can't afford them. Also supplement with eye drop samples my optometrist gives me but he doesn't want me using them more than 4 times a day due to chemicals in them...but they are soothing. One weekend before a follow up appt to my eye surgeon I used eye drops every 15 minutes! Do you use cold compresses! They help a lot but you have to use them a lot!! I literally did "vision fasts". no tv no reading/laptop for 24-48 hrs. My optometrist told me to do that months ago and that helped. It's a drag but I like talk radio (local is good and i do sports...try to avoid the hate talk radio popular today!?) I found the visual fasts to help and I still did frequent eye drops but have cut back lately. Spent half day with eyes covered in cool compresses (warm ones when I developed blepharitis..so now switch back and forth) I've heard about Plaquenil (old malaria drug) Also pilocarpain (sp?) which I've had in eye drop form in an emergency situation to lower pressure. Pilo comes in oral forms and some get great AID for the dry mouth from it. but it has side effects, mostly diarrhea or stomach upset but willing to try...it's cheap (least eye drops are) Have you taken neurontin? I'm tempted to try it for pain ... but read it's in capsule form and lowest dose is 100 mg

wow, I can relate. I've been carrying a water bottle with me since 1993! it was just annoying back then,...now it's very dry & my tongue hurts sometimes. I could not AVOID seeing an eye doc due to the dry eye (unless you got OTC moisture drops) My cornea was dry but you can also get bad infections from severely dry eyes. Gritty sensation. THEN after the surgery dry eyes for 6 weeks or so, came the bleparitis (which is also a sign that autoimmune system is over reacting) I am just STUNNED this laser iridotomy surgery triggered the eye problems. But when you think they blew tiny little holes in my iris (which is a muscle!) that has to screw up the Ph balance of the eyes but there is very little DETAILED info no this surgery. Few have severely Narrow Angles-Plateau iris issues. But a hot laser played a Starwars game in my eye and I am PERSONALLY convinced it change my eyes forever or at least months. They had hoped to open up the angle a bit as pressures are fine but now the plateau iris is a concern....Sugery was dec 28 & 30 (for each eye) My eye strain/pain/dryness is just now calming down that I do NOT spend HALF my days with eyes covered with warm or cold compresses. This is almost May. So now, I just have the dry eye and grit issue and have to be careful. i would love to own stock on the original Chapstick! it's the only thing that helps and recently I am using it more than ever when used to, DDAVP, to help my dehydration issues would help a bit. yea, this waiting around is a drag. I've just now been able to read online a LOT in the past week and have searched and read on Sjs & Lupus. Many fuzzy blurry over lapping symptoms that sound like ANS stuff...*sigh*